Moving beyond prevalence studies: screening and interventions for children with disabilities in low-income and middle-income countries

Research understanding the lives of children with disabilities in low-income and middle-income countries has predominantly focused on prevalence studies with little progress on evidence-based service development. At the same time, global attention in child health has shifted from child survival strategies to those that bring child survival and development together. This review examines whether intervention research can be better aligned with current theoretical constructs of disability and international guidelines that advocate for the realisation of rights for children with disabilities and inclusive early childhood development.

Considerable progress has been made over the last decade in recognising the significant numbers of CWD (children with disabilities) globally, and the associated risks and consequences for life outcomes. Opportunities to include the reporting of childhood disability have been capitalised upon in national surveys. However, this has not resulted in a significant shift in political commitment and investment in programmes. It is now justified to go beyond counting CWDs. International agreements, such as the United Nations Convention for the Rights of People with Disabilities in combination with the International Classification of Functioning, Disability and Health, the Capabilities Approach and Community Based Rehabilitation provide a framework for intervention design and delivery. By using these frameworks and approaches we have opportunities to link screening with services.

It is recognised that a combination of formal services (with family-based approaches) and family participation is needed in intervention design. For too long, the care for CWD in LMIC has been family led with little professional support. Learning from the experiences and solutions of these families may enhance the support and advice provided in formal services. These strategies need to be combined with community awareness to reduce the challenges families experience as a result of stigma, and remove barriers to participation in health, education and community life. Robust studies are required to inform policy and practice resulting in external validity of findings, analysis of process and information on cost savings.

Finally, international guidelines have been advocating for twin-track approaches for the inclusion of PWD (People with disabilities) in the mainstream development agenda, in addition to targeted interventions. Unfortunately, few research studies have taken the opportunity to review subsets of data on CWD in child health and nutrition studies. Within the child health agenda, global attention has been shifting from survival alone to strategies that enable children to thrive and develop healthily. Addressing the needs of CWD in mainstream early childhood development programmes is an opportunity for childhood development and disability researchers to work together for common goals. Inclusive early childhood systems have the potential to serve as foundations for a diverse and fair society.

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